Hi to everyone .I m glad to find this place and in big relief. When i read jeff's witness at Home page i told myself this is the place that i was looking for. So this is my story:
In May 0f 2006 i had my first cycle ,it starts with 2 crisis per week and in one month i got 3-4 crisis a day. I spent 3 months with painkillers and visiting 7 different doctors (and 7 different prescriptions) without any result. At end of September i found my resent neuro ,my hero lol, but for my bad luck after 4 months of painkillers, sleepless, endless pain(3-4 crisis a day kip 3-9), mind-loosing stress and head-banging on walls i was confuse and the diagnose was a mess. But this guy  was a clever one and gave me the right med. I started Topamak 25mg twice a day and in 2 weeks i was  at 50mg three times a day for a month . In 1 week i was a new man (but my nuero was canny, he told that maybe i was at the end of my cycle and if i was lucky i never see him again ,but if i had bad luck must see him at once. So 3.5 years later with out any sign my second cycle begins in early June days.This time the beast didn't loose any time ,2-3 concerts per day from duet (kip4) to full group (kip9) I was waiting for 2 weeks before i visit him again, just in case was something else (hopping). After 1 hour discussing my symptoms he diagnose Ch combo with migraines ( the only think that confuses him is when i take the hit i m just sitting motionless in a dark room without noise, i know its too early for head-bagging because i m still at kip 8). He gave me 3 solutions to brake the cycle, 1st was a ingestible block at the back of my head with cortisone and 50% success ( i think he knows its less but it did it for me),it didn't work . Now i m in 7 days Medrol (cortisone) 48 mg per day. In this 7 days the monster visit me 7 times (once a day) for a duet(kip 4) and 3 times with his group ( Kip 7) when i tried (with my doc's blessing) to lower the dose to 40 mg per day. Tomorrow we will meet again to discuss the things that i learn from here and make a battle plan for the next days, continue with Medrol or step to Topamak again (something tells me to wait for the philharmonic before i try this med again). Thats all for now, to my questions now:
1) any suggestions that i might discus with my doc?
2)any tricks to ease the pain? i tried ice ,cold sowers ,hot showers, tea from herbs the only think that works is caffeine but the monster hits me mostly at nights and i m a working guy. I m already 3 days sleepless and my heart is pumping like crazy from cortisone and caffeine.
3) how it goes from episodic to chronic?
4) does the beast plays any other kind of music? i hate this monotone boring think!

I m already feeling better talking to you people. Thanks a lot

P.S: sorry for my terrible English

It would be helpful if you would tell us where you live and give some information on the range and quality of medical care which is available to you.
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Suggest that you print the PDF file (below) and give you to our doctor.
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Also, print out this article for the doctor.



Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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It will help us to give you some information if you will ask specific questions about what kinds of help you need.

Welcome Exiz, sorry you had to seek us out, but glad you found this site.  It is loaded with information so read, read, read.

Some have found the herb Kudzu helpful in diminishing the frequency of attacks and in a few cases the intensity of the pain.  It does not work right away but over a period of a few weeks you may notice a difference.  Discuss everything with your Doc so you aren't mixing any bad medications or herbals. 

We all know what this pain is like and you will always find help and understanding here.

Wishing you Many Pain Free Days and Nights!

Ditto everything said above. One other thing: I've been caught without my O2 tank and mask before, and until you get one, this might help: I have successfully hyperventilated through rapid breathing, and while this is not as effective as pure O2, this along with some slight pressure on the carotid artery on the affected side has helped make the episdode endurable. But get the O2 and rebreather mask: portable E tank and a larger M tank for the home. Blessings! lance

I don't see why you couldn't use scuba O2,
O2 is O2   Check with your buddy on how to use and set the LPM.  Failing that see if you can get a-hold of some welders O2.

Good Luck to you.

What are scuba tanks filled with if not O2 ?

Oy... Thanks Guiseppi !